A blog about Rectal Cancer, and the roller-coaster it takes you on. No matter how sick you start to feel you just can't get off until it stops - one way or another - and in the meantime life goes on pretty much as normal.
So this is a blog both about rectal cancer and life going on as normally as possible... :-)
Please do feel free to leave comments, comments are great :-)

About Me

I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010.
Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Thursday, 31 March 2011

On a Mission now........

Recently, since I've started to feel a little better, I've been researching stuff about screening programmes and raising awareness - particularly in the UNDER 60's age group for Colorectal (Colon/Rectal/Bowel) cancer.

Some of you may, or may not, realise that in England and Wales the screening kit is sent out automatically to people between the ages of 60 and 74 years of age - HOWEVER in Scotland their screening programme begins at 50 years of age.

This seemed odd to me so I emailed the NHS Cancer Screening department last night and asked the following question...

I am curious to know why the screening programme is aimed at the 60+

age group in England and Wales but starts at 50 yrs in Scotland.

Since my own diagnosis of Rectal cancer (at 49 yrs old) I've come

across others in their 40's and even some in their 30's.

Screening at 60 is showing positive results but starting at 50 may helpto find some tumours before they develop to a later stage.

I'd be interested to know why there is a difference in screening ages in Scotland compared to England and Wales.

Today I received a reply....

Before starting the screening programme we conducted a pilot study

which showed that the most clinically and cost effective age to start

screening was 60.

80% of bowel cancer cases occur in people over 60.

It may be that we will extend the age in the future.

Now.... you all know me well enough to realise that this is not a proper reply to the question that I asked therefore further communication was necessary :-)

Thank you for the reply....

However, I'm still unsure as to why Scotland start their screening at 50 not 60....

Do they not come under the NHS as well?

I need to understand why there is a difference

Their follow up was brief and to the point .....

Carole They do but they have a different budget and so decide on different priorities.

Anyone else think that as England and Wales come under the same NHS, we should ALL be being offered the same screening service?

Usually, after a bit of a rant, I'll say 'Off my soapbox now'....BUT not this time.

Why is life considered to be of more value in Scotland if you're in the 50+ age group...why is it not important that some of the 20% of cases that occur in younger people could potentially be caught at an earlier stage?......MONEY and BUDGETS and 'different priorities'...

If you are in the 50 - 60 age group, how does it feel to be told you are not a priority when your cousin/friend/etc up in Scotland is?

Admittedly, in my case, it WOULDN'T have made any difference at all (there's no way they'll consider lowering the age to 40) but surely it COULD help the percentage of people who fall into the 50-60 age group in England and Wales.

Best thing to do is we should all move to Scotland in our late 40's eh

There are currently approximately 40,000 cases of bowel cancer discovered every year - which means that around 8,000 of them will be in people under 60...

I'd love to know how many of these fall into the 50-60 age group. I'd guess at 'quite high' figures...

Remember also that if discovered by screening many people will not fall into the later stage categories - therefore saving the NHS a fortune on surgery, ongoing chemotherapy, radiation etc.

The smaller and earlier a tumour is discovered means less treatment and less cost to the NHS...do they really think that money saved on NOT screening is cost effective in the long run?

I can't see that myself.

My operation alone must have cost them thousands, along with my 10 days in hospital, Chemoradiation treatment prior to surgery then adjuvant Chemo (if I'd decided to do it) plus now ongoing check-up's for the next five years.....

Interested in your comments.

And no, I'm not getting off my soapbox....I'm going to think about what to do next about this unfairness.

In the meantime, I'm concentrating on trying to raise as much awareness as possible with regard to symptoms.

Added Note:

I've received numerous emails about this post - all offering help and this is something below that I need help with at the moment.....

If you can find any statistics for me on people between the age of 50 and 60 who are diagnosed with bowel/colon cancer that would be really helpful.

I can only find 'overall' statistics at the moment. I know that 80% of cases occur in the over 60's but need to know HOW many fall into the 50 - 60 age group.

The other data I'm having trouble locating is how many people between 60 and 65 are diagnosed at Stage 3 or above via the screening process.

12 comments:

Hi Carole, I haven't messaged before, (I'm afraid I'm one of those lurkers in the shadows!!) but I have been following your blog and input on the CR site, since my Dad was diagnosed with rectal cancer last April - any way to the point!! It was great to read your recent entry and to hear that your fighting spirit sounds back in tact-I have been rather worried about you!! It is outrageous that there are such discrepancies between Scotland, Wales and England when it is supposed to be the NATIONAL health service!!! Count me in if you can find a way to protest against this state of affairs!! All the best.Chezzy x

On a finite budget, the NHS cannot afford to offer everything on the market and where to spend and where not to will always be emotive.

Did anyone else watch the recent episode of “The price of life”. Every year in the UK a few hundred babies are born in the 23rd week and transferred to paediatric intensive care. A shocking 91% per cent of these babies will die in the first few weeks of life and never even leave hospital. Of the 9% per cent who survive, most are disabled.

Their care costs were estimated in 2009 to be £939m a year. The treatments to keep them alive for a few weeks made distressing viewing. Some of the medics interviewed had doubts if they would want this for their own baby. Should the money be better spent elsewhere?

Firstly I know that money isn't infinite HOWEVER as Chezzy pointed out in the following message we are supposed to have a NATIONAL Health Service. Why the decade of difference between us & Wales and Scotland. It's simply unfair to discover that a person here could die in their mid 50's just because a simple test isn't available BUT if you lived just across the border then it would be. Apparently the rest of the EU also test at 50 (but I need to check this)

I didn't see the baby programme and medic's views are only relevant to me once they are actually IN that position themselves - what they say now could end up being very different to what they said if they were the parent of one of those babies.

Welcome to my world :-)) It's good to have you here and I'm glad you've posted your thoughts on this one.

I'm determined to do something to correct what I'm seeing as 'wrong'.

Putting aside the cost side of things for a moment, it's plain wrong that a person has a greater chance of life in Scotland when we ALL pay NI and we are supposed to have a NATIONAL Health Service. I'll accept it *only* if we introduce REGIONAL Health Services.

As I said, it wouldn't have benefited me in any way but it may help others. In the meantime I'm concentrating on trying to raise overall awareness of colon/rectal/bowel cancer as it's still the 'quiet' cancer - no-one likes talking about bums and poo! Soooo, *I'll* talk about it until people start listening

Hi Carole,Great to see you so full of vigour!!!I agree with you totally........If you have ideas on how to combat/confront or takle this issue in anyway, I will support and help as much as I can!HugsCarol

Did you catch the news report this morning on the revised prescription charges? There was a representative of the Campaign for an English Parliament talking about the discrepancies in budgets between England/Scotland/Wales including what % (afraid I didnt catch the figure) of English NHS income (i.e from the prescription charges) goes to screening programmes in Scotland and Wales.

Another guy with the job title 'Health Economist' (didnt catch his name, bobbing in and out getting ready for work etc) said "with the earlier screening programmes in Wales and Scotland (cervical cancer screening starts 5 years earlier than in England and as you point out bowel cancer screening age is lower in Scotland - F) you would expect better outcomes - but they aren't".

Yes, I caught part of it during getting Dj ready for school etc and think the figure was 49 million (Dj thought it was 48 billion) but would have to double check.

Just found this on Cancer Research site "Bowel screening is effective at cutting deaths from bowel cancer in people in their 50s, 60s and early 70s. As bowel cancer is rare in younger people, a population screening programme would not be appropriate". Health Economist guy said 'no better outcomes' but Cancer Research say it IS effective...Never trust a guy who deals with money eh :-)

Soooo, Cancer Research agree that screening at 50 IS showing results. Therefore it should happen here in England too. Not everyone would take up the offer but it could be done as part of the 'Annual Health Checks' that most surgeries seem to have now starting offering.

If it was also 60 in Scotland/Wales/EU then I'd accept that 60 IS the right age to start - but even Cancer Research are saying '50's to 70's'...It's just unfair and I know the next time I read about someone on CC at Stage IV in their mid 50's in England, it will piss me off no end!

Health is a devolved function, so the 'NHS' as we know it is split into 4' England, wales, Scotland and NI. That's why prescriptions and adult social care is free in Wales and Scotland but we have to pay for it.

You could try contacting Glyn Davies MP, given he has a permanent colostomy, though he's a Welsh MP, but might be useful.

Thank you Sue, off to check the link you've given me now. I thought I'd exhausted all the links on Cancer Research but missed that one - well done & thank you. That's why I need others to do some searching for me too :-)

Contacting Glyn Davies is an excellent idea - many thanks for the suggestion :-)